I WANT MY WIFE BACK

SATURDAY, MAY 24, 2014

--I WANT MY WIFE BACK--

First,  before I start on today's excitement, I have not been able to blog for a while, not because of the neuropathy, but because this is a sacred place I like to come, to get real with my feelings and come to a higher ground of healing--I'm having a hard time coming to grips with the new me--I don't like it--I feel like everything that has lead up to this moment was supposed to prepare me, but it hasn't, and I feel like a failure in so many ways--with this being said I want to lead up to today's events.

May 16 -Eric's birthday--I called and asked him to please NOT come to the hospital; I wanted him to spend some time with the family and grandkids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a tough time agreeing with this--but I insisted.

Ezra and Recker with Grandad on his birthday

I wish I could have been there, but so glad to get this picture text over to me--I love these little guys and really miss them. Eric could go to dinner with the kids and have a great time with the grandkids.

Saturday, May 17

Today, Eric brought me home from the hospital--as happy as I am to be home--I am still drugged up and cannot wait to get myself off these pain meds. If I listed the drugs I am "supposed" to be taking, it would blow your mind--it does mine--I know they are doing this to keep my pain in control, as I was in extreme pain while in the hospital. So I started slowly taking myself off them to ensure I was not in any pain. 

 I knew I did not want to go through the pain I had initially felt, so I have taken every precaution to ensure I am OK. The 1st couple of days, I slept hours upon hours--then tried bit by bit to slowly wean myself from the medicine; today, I am completely off of all pain medicine and back to the regimen I was used to before this episode.

  We arranged for a home nurse to come in and teach Eric how to administer my antibiotics twice per day through a PICC line in my upper arm. Every morning, Eric administers my medicine through my PICC line; that evening, 12 hours later, he does it again.
Last night the home care nurse came by to take blood--it was a difficult take--my PICC line was clogged up, and it took her over an hour to pull any blood out it felt as if blood was being pulled from my heart.--and I think she just barely got what she could.

Today is Wednesday, May 21.

Eric and I got up early. He wanted to be with me at this appointment today. First, he had to access my PICC line, which was extremely hard for some reason. Now both sides were clogged up, and Eric was putting all of his weight into it he was able to finally push through, with little blood return. Once that was done, we headed on our way to Mayo Clinic--I looked at myself and told Eric I don't think I have ever left my home looking like this. He didn't see anything wrong with it. My shirt was wrinkled, I had no makeup, and bruises were on my face, arms, and hands. I was a mess. 

To walk into Mayo Clinic today was excruciating. The smells hit me from every direction--I could see the people I walked past looking at me as if I had a massive tumor growing out of the side of my face. I thought I should have left my sunglasses on and worn a mask. I would look perfectly normal here--when we checked in, the receptionists saw my PICC line hanging out of my shirt and asked me if I was supposed to be on the 7th floor at the hospital (equal to the 3rd floor on the Shea Campus--ports, PICC lines, and chemo) I said, "I have no idea, the lady who called yesterday asked me to come for blood work to be done before my appointment with Dr. Barrs." I assumed she knew it was to be taken from my PICC line. She said no, it was to be drawn from a vein on my arm. I was immediately called into the lab, where she proceeded to find a vein--nope, not that one. After several attempts with insufficient blood being drawn, she tried one last time in my right hand. Yay, it worked. She was able to get just enough blood.

I found out the blood work was being ordered by my endocrinologist, who had recently changed my thyroid medicine and was checking to make sure it was a high enough dose--I suddenly remembered I had that appointment with her a couple weeks ago. Hence, she had no idea what I had been through these past weeks. 

As we stepped out into the waiting area, something was always going on, but today I was not in the mood. Still, a part of me watched as people came in and out. Today two people stood out in my mind. One was a doctor who arrived in his scrubs and sat down. He was looking around, and our eyes met, and then he was called back for labs. A man and his wife were waiting to see an ENT in the other corner of the room. He tried to speak. He had to activate his voice by putting his finger on his throat. I watched him scare the lady off her chair next to him as he leaned in to ask her a question about some video game she was playing, she apologized, and he then returned the apology. This brought the 1st smile to my face in weeks. Why? Maybe because I saw that they, too, found humor in it.

We were called back and sat in a room where we waited for a very long time, but not longer than my appointment was supposed to be. We had just gotten there too early for lab work. Dr. Barrs came in with his resident Dr. Coursin (Andy). I had been in such a foggy head the second I saw him and remembered seeing him quite often at the hospital. He is a pretty familiar face, one I enjoy seeing; he's quiet yet seems to know his stuff.

I told Dr. Barrs I had taken myself off of all pain medicine--I think he was surprised but mainly wanted me to be honest with him about whether I was feeling the pain or not. I reassured him and Eric that I was not in pain and was trying to de-fog my brain from all that junk. He agreed it was OK as long as my pain was gone.  

Then he took a look inside my ear--it is really corroded with dried blood; I was hoping they were going to clean that out today--nope, he filled it with bacitracin which was like filling my ear with Vaseline, and the hotter it gets outside, the more it melts and makes a mess. Then he asked me to come to take a seat next to Eric. He told me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital). Within days, the nerve he covered with a graft of skin became gangrene; in other words, the nerve died. He gave Eric a picture of it; the flesh around it is healthy, but the nerve died. It was black--and is now being covered by packing in my ear.

OK, so what is the next step? Dr. Barrs begins by explaining he has a team of Doctors available to help with surgery on June 03. There were some options. Dr. Barrs explained the minimum was to cover the nerve with a muscle graft and wait. Or go in and graft over the nerve and have another doctor there to do something with the nerves in my tongue to reposition over to the nerves that are not working in my face. 

I'm sure I got some of this wrong--the whole time he was talking, I felt like I was in a charlie brown cartoon, and the teacher was talking, but my ears were not understanding--waaa waaaa waaa-- I continued to look at Eric and make sure he is taking notes.  

Eric said, "I want my wife back, and I want her to be HAPPY again," Dr. Barrs said, "if you're asking me if the right side of her face is ever going to be the same again, the answer is no. I'm sorry, but the nerve is dead, and we cannot bring something back to life that is dead. You need to start loving your wife and forget about her face ever looking the same again." I could feel the tension. Eric did not know how to respond except, "I never said I didn't love my wife. I just want to see her happy again."  

Dr. Barrs looked at Eric and said, "She needs to learn to love the new Monya. I was fond of the Monya you and I used to know, but I also love the new Monya, but I need you both to understand she will never smile again." Eric asked him if we could have a few minutes alone. When he left the room. Eric and I looked at each other with questions what should we do next? Are we being hasty in making a decision? Actually, just the opposite, we looked at each other and said, "We are not making any decisions today; we are going to wait, pray as a family, and make a decision when we are ready. With nerves, I know there is a window of opportunity, and we need to make decisions quickly. However, not today, not now, please. I'm so confused.

 Fighting back the tears, trying again to be BRAVE--I think I have finally gotten to a point where I am ready to say, "Why me?" I've done everything I've been asked to do, all Dr. Kreymerman, Dr. Magtibay, Dr. Northfelt, and now Barrs have asked of me. I have lived a life worthy of feeling joy, I know my tears are not meant as a surrender, but I'm tired. The pain is not going away, and I'm not talking about the physical pain. This pain comes from deep within me--it makes me question everything I have preached to my children to live by. I trusted Heavenly Father; why was he abandoning me?  

I believe there are times when life throws us into unexpected storms, and it's at those times we are forced to face our most profound pain--it is then that we have to dig deep and decide if the pain is worth it; I know this life gives us disappointments and HARD things come. I have been forced to stand up, be BRAVE, put on my big girl pantie,s and move on. Today, I'm not there--I just want to cry, and I deserve to cry until every drop has left my body--

After leaving Dr. Barrs's office, we headed up to the infusion floor. The seventh floor of the hospital is where the chemo is infused. The antibiotics I am being infused with twice a day are very strong and cause my body not to work as well as I am used to--I spent a bit of time in the bathroom several times while waiting to be called. Eric took care of checking me in and getting our beeper. I positioned myself in chairs so we could see the outside mountains, dessert, and sunshine.  

I kept thinking about Dr. Kreymerman; most of the time, I look forward to these visits knowing I will be able to see him and Heather and even have lunch with them between appointments. Today, Heather is not available for hours. I'm nauseous, taking in the smells of this floor, this hospital where I was just discharged from last week--it's more than I can handle. When I close the door on this place, it lets itself back in. For some reason, it enters my life uninvited. It allows me to go, but it finds me again. I can't help but wonder how many times I can pick up these pieces and start over again. 

I watched as a nurse came and got Shirley, pushed her back in the wheelchair, asking her if she was ready for her IVIG infusion today? What kind of question is that? Who says, "Hell yeah, I'm ready to. Let's go. It's a party back here?" 

This is not just passing through. This one is BIG. Just as soon as I feel I'm in a good place and can move forward, like I've let this go, it always finds me again. I can't handle it anymore. I wish I could say the tears release my pain, but in so many ways, I feel like I am constantly learning to breathe again and again. This time it's more than tears. It's the sobbing, not wanting to be left alone, I can't handle. I'm sorry this is so real and raw. I know God did not make my body a place to constantly feel this pain. I wonder how long the depression and despair will last. This is the VILLAIN taking on a different name.

 I watched as plenty of people came in and out of the infusion unit today, some bald, some carrying their chemo packs on their backs in a backpack--I was trying every way I could to have a pity party, but then someone else would step off that elevator and give me a new perspective--a man with one leg, being pushed in a wheelchair by a not so patient wife, or a patient wearing an oxygen tank.  

It took quite a while before we were called back, but a cute young, well-qualified PCC line technician finally took us back into a room. She could not access it and had to put some medicine in the line and asked us to return in an hour. We went down the elevator. I just wanted some fresh air. I heard a "code blue" at the entrance of Mayo; seriously? Could anything else happen today that would push me over the edge? Right before me, I watched a woman take her last breath. They worked as hard as they could, and I watched and wished it was me. What the hell of an exit--drop down at the entrance of Mayo Clinic on your way to your car, take your last breath, and be done, done with Mayo, done with pain, done with having to make medical decisions. Today, I have no grace left in me, no patience, no remorse, no regrets, and no feeling.

Eric was waiting for me in the cafe. He wanted to grab a bite to eat--none of it looked good, but I tried a bit of everything-- grilled cheese, tomato and arugula sandwich, hot dog (something I never order), minestrone soup, and a white chocolate raspberry bundt cake--none of these were eaten--just itty, bitty bites--As I walked outside to find the perfect table, I glanced over. I saw Tony Mendez, PA, to Dr. Barrs. He didn't even recognize me.

I've always said, "since I've done away with sugar, processed foods, and white flour, per Dr. Northfelt's request, if my cancer comes back, my final meal will be filled with all of the above" However, today showed me the exact opposite--none of this looked good to me, none of it tasted good, everything I eat tastes like metal--this is from the infusions of antibiotics. I want to throw up every time I try to eat--and it mirrors how I felt going through chemo.  

If I am honest, I would much rather be sitting in front of Dr. Northfelt and having him tell me...these exact words, "your cancer is back"  At least with cancer, it was challenging to go through. Still, the VILLAIN did not win; I hate when people say, "she or he lost their battle to cancer," but no, they didn't. Most people who go through cancer treatments come out on the other side of it a better person, a stronger person, given a chance to redeem themselves and help others to do the same. I feel this thing with the nerve in my face is not going away--I'm not sure how I can recover from this.

 I feel like I have a heavy load. I can hardly breathe right now--my strength is gone, and I'm weak--I don't think I've ever felt this emptiness I'm feeling now.  

I've asked friends and family to pray for me, to ask the Lord to heal me, or to give me strength to endure whatever is coming next. Maybe their prayers will be heard. How many times do I need to do this? Eric said softly, "You are beautiful." Today, right now, I don't want to hear that. I'm sad, I'm scared, and I'm angry.

 After we finished up my PICC line, we were given the green light to go home--I ran to the elevator, got off on the 1st floor, and ran past the piano player. As I passed the area where the lady had just passed away less than an hour ago, I glanced over and looked at the people sitting in the chairs surrounding that area and said to Eric, "I wonder if that guy knows an Angel got her wings today, exactly where he is sitting" and then I ran as fast as I could to the car I mean I was like a bull trying to get out of the pin--Eric said, "Sweetheart, you really need to keep your voice down while you're walking or running through the exit."

This has been a tough week; looking in the mirror, I am a different person--my face has partial facial paralysis, not bell palsy. I've been told it is permanent and that only 2% of people in the world have it for the same reasons I do. I don't want to look in the mirror--this is much worse than when I looked at my breasts for the first time after my mastectomy, at least then I could cover them up and have them fixed, and the baldness was hard, but it never defined me--it grew back. No, this is much worse. How can I continue in this body looking like this? So many people will say, "but your alive," or like Dr. Barrs told me today, "But you have your eyesight" Those words pierce my heart right down to my soul--I know those are supposed to be inspiring and help me to move forward, but right now I need to process what happened today.

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What Happened?

SUNDAY, MAY 11, 2014

What happened?

I am in extreme pain; it hurts to type this. I don't know what happened; I took a hot bath and felt fine. Eric came in to check on me and ensure I hadn't drowned. I laid down to sleep around 3:30 am, and suddenly had massive pain in my ear, going down into my jawline and throat--it's difficult to see. I've had some liquid in my left ear this week, but it only lasted for about 3 days and finally cleared up. Other than that, I think I've done well without pain medicine. The way I feel right now is I wish I could go to sleep and not wake up--I've taken the pain medicine to see if it will help--but the pain is getting worse--my eyes are blurring, trying to type this out as a blind deaf person is hard--but just in case I don't wake up I want Eric to know what's happening.

After my bath, I brushed my teeth and changed out the cotton ball because it was soaking through. I felt a pop in my right ear followed by immense pain--I was supposed to be at Dr. Barr's office at 12:00 today, this is awful--I can't do this; I feel like I have no control my legs won't stop shaking and now
My body is quivering, I cannot stop moving my legs, and my arms have no control--the pain is that bad.
I can't type anymore, it hurts too badly.

Written Wednesday, May 7th

Eric said, "Goodbye have a good day," and kissed me goodbye. I looked at the clock. I still have 3 hours to decide what I will do, I'm in so much pain. I got in the shower thinking the water might make me feel better--something is wrong I can feel it--pain in my inner ear is now shooting down my jawline and to the back of my skull--the nerves in my upper ear are burning, electrical shooting pain it won't go away.

No tears were coming; I was more afraid than anything else. My good friend Jori came by the house to pick up some Nerium for her daughter Emily, and she mentioned, "do you feel OK? you look like you have bell palsy?" I told her I was on my way to see the doctor and would find out more. I went upstairs, and sure enough, the right side of my face was drooped and sagging, no control over the nerves or muscles, my lip is drooping to one side, and I cannot shut one eye.

I drove myself to Mayo, arriving early, still not being able to control the pain, shaking while I waited in the waiting room. It didn't take long. I was the 1st one they called. Dr. Barrs is usually always on time, and in he came asked me to step up on the table, looked in my ear, cleaned out the debris, then helped me to the chair--he could see without asking that I was in pain--and the lack of facial control I'm sure was concerning to him. He got Kathleen, and she took me to the admissions area and explained I would be admitted into the hospital; the fourth floor in cardiology was the only bed they had for now. What? Who cares what bed I'm in? I just want to get this pain under control. I said goodbye to Kathleen and gave her a big hug; she is so sweet I enjoyed her when I went to Dr. Barrs office she is a beautiful person inside and out, and I know Dr. Barrs relies on her a lot for her professionalism and support.

As I sat in the waiting area, I could not control the shaking pain I was feeling, waiting for them to call my name. It seemed like I had been here forever. Finally, they came in a wheelchair, and they took me to the fourth floor. I remember the doctors in the elevator. They were cheerful and happy; why? It's not Friday...but as I listened, they were excited about a surgery they were going to do. Oh dear, that is the last thing I want to hear about right now--just get me to a room and take this pain away. They did, but not until Dr. Barrs resident came around to see me. In the meantime, I called my sister Sonya bc I couldn't contact Eric. 1st thing she asked, of course, was, "did you drive yourself?" "um...yes, I did, you know how I feel about people waiting around for me." she sighed and "said I'm on my way, and I'll call Marian and Eric"  I said "No I won't be here long and I hate people having to drive all the way out here"  She then asked if I thought she should tell my kids, I said yes, but not to have them come, I don't remember much of that conversation, the pain and agony were throbbing and uncomfortable.

Wednesday was quite a day filled with testing, pokes, blood draws, scans, MRIs, and CT scans. As they began to get me dressed and ready, I knew this was not going to be an in-and-out day. 

Blake was the 1st one to arrive; he kissed my head and said, "I love you, mommy." By now my pain was beginning to get worse. Sonya, Kris, and Eric had all arrived. My pain was so bad that the nurses had to put meds through my catheter and of course, it was difficult for them to find a vein. By this time I was in severe pain and was curled up in a ball of pain, the right side of my body was shaking severely and I was whispering to them to please just put some medicine in my IV that would put me to sleep and not wake me up...." sorry sweetie, we can't do that" "oh but Eric it is excruciating, I want you to just get a gun and shoot me in the head" 

The medicine was finally administered but by the time it had entered my mainstream I was in pretty bad shape, it looked like I was having a seizure with my body curled up and still shaking, my husband, Sonya, Kris, and Blake all witnessed this awful attack. Then later that night in the ICU all my children were there and had to see it again...I feel so bad that they had to witness their mother in such pain--I'm sure it was exceedingly difficult for them. I have never in my life felt that type of pain, and my body reacts by curling up, pounding the bed, and wanting to be put to death. Difficult to hear I'm sure but also try to imagine it is difficult for me to write too, however it is my reality. I later read some of the text messages that were coming through on my phone, and people who I love very much need to learn what to say and what not to say. This is my journey, not yours.

 I am trying to deal with it the best I can, I rely on the Lord, I am not depressed, and I'm past that, yes there are times I have moments of doubt, but I have very few people who can relate to what I am feeling.  I love my friend Heather who has been here every day to check on me; she has been a great strength to me for the medical questions I need to be answered, which, quite frankly, I do not understand the lingo. She explains it to me in terms I can understand, sometimes not so easy to hear but still the truth, and I like it straight she knows that. I've said it before, and I'll repeat it, there is no one living human who knows what I am going through but our Savior--Just as I do not understand fully the pain of going through a divorce or the heartache of losing a child--the Savior does. Those people can turn to him for strength, which is what I have learned to do.

I kept telling Eric I had seen everyone I cared about seeing but Recker, my sweet little Recker. Just as they were wheeling me off to surgery Kayla brought him in, he did not like to see me in that bed, he thought it was for him, because unfortunately he too has been in hospital beds, and it was a reminder; I'm sure to him. It made me sad to hear him cry so hard; he was melting down, and it brought tears to my eyes, I love him so much and wish I knew what to say or how to understand, but then again, the Lord is the only one who can utterly understand exactly what Recker feels.

 Off to surgery, I went. On the way, I had the pleasure of seeing Doctor Magtibay walking toward my bed. He said, "I thought I heard you were here, and he gave me a big hug" This was a happy thought to go into surgery with he has always been one of my favorite doctors on my team. I remember the mask being placed over my face and waking up in recovery. It did not take me long to wake up, and they returned me to my room. My family was all there, with the exclusion of little Ezra, Recker and Kayla, and Jeremy. We also got the unexpected and genuinely nice pleasure of visiting with the Lentz family, Terry has worked with Eric for years with Blandford Homes, and his wife Diana and I have also become friends. They brought these beautiful Hydrangeas I love them they are my favorites, those and Renuncuulas.

Terry & Diana Lentz

Diana is known for her beautiful floral arrangements

Love my sisters-Kris and Sonya

The night nurse Adaesey--Love Her

Haleigh Kaitlyn and mama.
.it looks like I'm sad, but the facial nerves won't let me smile

making light of the bells palsy--love the humor of my son in laws

and my daughters---I really did try to smile

Love My Girls. Just missing Chloe and Kayla

Just can't keep that eye open

Dr. Barrs came by on one of his days off. He is concerned about my condition and wanted to make sure I was aware of the severity of the ear infection and that my pain management was under control. The skin grafting he did on my surgery I had 10 days ago was already turned into gangrene. This means the skin is dead, and there is also some infection that is being treated. Right now, I have the infectious disease doctors on board yesterday they took 60 mm of blood out on my hand, the only vein they could find, however, it took them about an hour and a half to do, and barely got what they needed. Neurology is helping with the bell's palsy, but we are also concerned that some facial muscles and nerves through my cheek and jawline, then up through my skull at the base of my brain, are being affected. What will happen is really up in the air right now. I spoke with a doctor who works with Dr. Barrs about doing a flap to help with the disfiguration--I've been drugged up so much because of the immense pain that I don't know from one day to the next what has happened. I love my doctors, Dr. Howard is so great, and I am eternally grateful she is on my team working with Dr. Barrs. I'm not sure what I have done to deserve such beautiful and wonderful people on my medical team, but I feel like all the medical angels were called in to be on my team, especially picked out for me; I can never say thank you enough to them.

The pain is only under control through the regimen Dr. Howard has helped with it. It seems when I get up and walk around, it accelerates the pain and is excruciating. I need to get circulation so we have a good hold on keeping the pain level as much as possible at about a five with one being the best and ten the worst. As soon as it gets up to seven I try to get to the first dose of pain meds, then go to the bathroom, take the next dosage, and make a walk around the nurse's station with the help of one of the nurses, then by the time I'm back to my bed the level of pain is usually nine or ten. Still, I am trying to get the shaking and seizure- episodes down, so we can move forward, I will be here for a while.

This is about all I can type for now, and is caught up--I am looking forward to seeing my family for Mother's Day and want to wish all my friends Happy Mother's Day to each of you. Take those sweet kids in your arms and love them, unconditionally love them--let them know you care and that you are here for them NO MATTER WHAT--

for now, I love you all xoxo Monya

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Anxiety-Insomnia-and Finding Peace

 

TUESDAY, FEBRUARY 22, 2011

Anxiety-Insomnia-and Finding Peace

I am trying to learn to control the thoughts that bombard my brain. The flashbacks I get seem to be uncontrollable for me right now, creating anxiety and insomnia. I believe that my last surgery was not about CANCER, although I can still accept it as a Miracle in my life. I can also realistically assume that there are things from my past that have haunted me for years. I believe Heavenly Father put that miracle in my life for a purpose. He is trying to teach me to deal with my past and come to a place in my life where I can LIVE FREE, free from the demons that constantly create these horrible flashbacks. When someone tells you, "don't be anxious, or think of something else while you are trying to sleep," Those statements in themself create anxiety. Trying not to think about sleeping makes me want to sleep so badly, but I can't because I have worked myself into such an anxiety attack that now it is too late. I never had anxiety or insomnia before the VILLAIN decided to invade my life, but now that I have it, I'm trying to deal with it the best I can. Now that I have had this hysterectomy, it is getting worse. The anxiety that built up inside me just to get myself to have the surgery still lingers in my thoughts and feelings. The appointment with Dr. Magitbay next week is constantly on my mind, and I am scared to go.
My right breast hurts so bad, and I wonder if cancer has taken up residency again. It is this vicious cycle that Cancer patients go through. I'm sure it's nothing, but in the back of my head is that silly thought. The Lord has been so patient and loving to me, and I thank him forever for things and every one good in my life. With HIM, I know there is nothing I cannot endure. I try to find peaceful moments every day to reflect on all that HE has given me.

Dr. Peter Kreymerman Leaves For Fellowship

 

TUESDAY, JANUARY 11, 2011

Dr. Peter Kreymerman Leaves for Fellowship

Today I thought a lot about Dr. Peter Kreymerman and his family moving to Atlanta; there will be a massive storm there. I pray for success and happiness for him and his family during his fellowship.

 I'm home from the Mayo Hospital. However, I had to come home with a foley (cath). Seriously? that is nasty. Even though I won't be going anywhere other than my bedroom, I still don't like walking from the bedroom to the bathroom with a pee bag hanging from my pant leg, and then I have to empty it..... nice!!! Tomorrow I will see Dr. Magtibay, get the foley out, pray I can go to the bathroom on my own, and if all goes well, I will not have to go back and see him for 6 weeks. Tomorrow we get a miracle; I know we do.
I am still in pain, which is to be expected, but mentally my demons are gone. I know there will be days when I have to face him, but I've taught myself how to let go and let the Lord take it.

Still a little Out of it

 

MONDAY, JANUARY 10, 2011

Still a little Out of IT

This is what I wrote down as I waited at the Mayo Friday. My hands are shaking so bad, and my thoughts are with Trys; it's hard to believe we are both having surgery today-her in Rochester Mayo and in Scottsdale Mayo. Walking from the car through the Mayo hospital doors, I told Eric feels like I was walking the Green Mile. It's 9:30 am, check-in time. The sitting, anticipating, watching, waiting, and the pacing are terrible. I hate this part. I feel like I need to throw up. My stomach is sick, partly because of my nerves and somewhat because Mayo smells of sickness today! I'm in my most comfy jammies with my breast cancer blanket wrapped around me; Eric is rubbing my back and reassuring me...this waiting is terrible. I am going into the OR today with 3 wallet-size pictures, one of Eric and me in Paris, one of Recker, and the last of me letting balloons go to Heaven for Paige; this one reminds me to let go and then let the Lord do his stuff. They finally called my name over the loudspeaker to take me back for pre-op. They tell Eric he can come back in about 40 minutes before I go into the surgery.

I know the routine. It's always the same, only this time I am petrified. I'm shaking and in a fetal position. Dr. Magtibay comes in to see me and tells me it's all going to be okay. As soon as he left, I curled up under my blanket and cried like a baby, I could hear nurses coming into the room and scurrying around, but I didn't take my head out until one asked me if I was okay; I said "I'm fine"  then I wonder what is happening to Trys right now, is she alright? While going into the OR, the nurse told me she liked my blanket and that Recker was such a cute little boy; I was clinging to those pictures; they helped take my mind off what was about to happen. I got the best surprise ever....while I was waiting in the OR for them to put me out, Dr. Kreymerman came in to see me; he stayed until I went to sleep. He will never know what that meant to me, his face was the last one I saw, and his voice was the last I heard; thanks, PK, you really are the best doctor in the Universe. I will miss you the most; how many doctors leave their office and go to the hospital to see a patient get put to sleep for another doctor's surgery? All because he knew I was scared... I love Doctor Peter Kreymerman.
I woke up in recovery and was ready to go home; I just wanted to get out of there, not physically but mentally. I have this love/hate relationship with Mayo Hospital. I remember waking up and asking about Trystan; how is she? They had no idea who I was talking about. Where is my husband? Where is my uterus? The nurse said, "are you in pain?"  I responded 'very much so" "FROM ONE TO TEN, HOW WOULD YOU RATE YOUR PAIN?"  well, I'd say when it gets to the point that I want to kick you, then it's time; I hate pain meds, and will put them off as long as I can but....... it's time, right now, or I will start kicking and screaming. My post-op nurse was so lovely. She stayed with me until I went to my room on the 7th floor. Room 64. Never been to this room. I always come to the 7th floor, though.
Taking me from the OR bed to the regular room bed was difficult; I had to lift my weight, and I did well. They readjusted me a little, but I could see some blood. They quickly replaced that with a clean sheet. Thank you. I don't remember much about this night except my children came to visit, and Recker was all over the place. He laid his head on my shoulder a few times and gave me a little kiss.
If I stayed awake to enjoy them, I don't remember, I just remember waking up with Eric in a bed on the floor next to me, and right now, as I write this, I am dozing off....so I will write a bit more later

Dr. Magtibay is a Good Man/Mayo Moments

 

MONDAY, JANUARY 3, 2011

Dr. Paul Magtibay is a Good Man

Dr. Peter Kreymerman

Dr.Paul Magtibay

This morning just as I left my house and headed for the Mayo Clinic, my phone rang. To my surprise, it was Dr. Paul Magtibay. He was calling me to talk briefly about my surgery on Friday. I was so happy to hear from him; as I explained some of my fears, he listened with an intent heart. I knew he was listening with his ♥ I could feel it. I feel like I am the most blessed person to have such great doctors. 

As I drove home on the beeline highway, I noticed the mountains were the most beautiful I had ever seen, bright red and completely clear. Off behind that red mountain was another mountain topped with beautiful white snow. What a contrast,!! We live in a beautiful place where the Lord has blessed us with earthly beauty. I thought about Trystan and wished she was with me to take a picture; she is a very talented photographer.
Today at Mayo, there was the hustle and bustle. If you have never been to the Mayo Clinic on Shea Blvd., it is quite an experience. It's like a little city all of its own, and all the people who live there have common interests, but yet are all in their own little world. Does that make sense? 

This is what I experienced as I waited. I see an older gentleman asleep, his head bobbing, reminding me of someone trying to stay awake in church. Now my eyes and ears are tuned to this man who, from his obvious accent, is from New York or New Jersey. He is very loud, and everyone in the waiting area (which is enormous) now knows his entire medical history, and every complaint is aired for all to hear; however, he is very polite and extremely entertaining. 

I then saw an elderly woman stroking her husband's head very lovingly; I found it interesting because she stroked his head as if she were running her fingers through his hair, only...he was completely bald. She loves him, and I can tell they are in love by looking at each other.

Many people are texting, one man with his headphones on, rockin' out to the music, body movements and all. He is 'lovin' life right now. The best part is he is oblivious to the rest of us. Then over the loudspeaker, I hear "Reverend Larry Johnson" (I changed the name). Suddenly, the New York funny man stands up, throws his hands in the air, and says, "Don't look at me, but "God Bless, Rev. Johnson" it was so funny. Just then, this lady with an attitude walks by and looks right at me and said "this is a freakin' 3 ring circus" I just smiled then thought to myself "I love this 3 ring circus."

After my appointments at the Mayo on Shea, I had to head to the Mayo Specialty Building next to the hospital for the rest of my appointments. I stopped by to see Dr. Kreymerman and Heather. I got to see PK, but Heather was with a patient. Yes, I still love him. I know that was what you were thinking.

I now had an hour and a half before my next appointment, so I decided to go to the cafeteria and people watch.... funniest part of my day. There is so much going on around me; where do I start? I was talking on the phone to my dear friend Trys. Out of the corner of my eye, I saw Dr. Kreymerman walking by and talking on the phone with someone, probably his wifey. He didn't see me. Still, I notice a woman in a pink breast cancer sweatshirt just beyond him. I'm not sure why she caught my eye, but this is what happened...she stood up. 

She decided to take off her pink sweatshirt, and along with her sweatshirt off came her undershirt, and she was standing in the middle of the cafeteria in her bra. Seriously? Are you kidding me right now? I would have felt bad for her and tried to assist her, but she had no care in the world. The doctor sitting at the table next to her tapped her as if to say, "Uh, you're half-naked....in front of everyone" she looked at him and just shrugged her shoulders, took her time to put her undershirt on; no big deal. 

Now, she is a true Mayo Patient. She has probably been so exposed to doctors, nurses, and students that she just said, "To hell with it, who cares?" I know how that feels. Except with me, I just forget to put my bra back on after taking it off so many times.... haha.

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Our family likes to get together on Monday nights for dinner, games, singing, and a spiritual or life lesson. We call it FAMILY HOME EVENING. Tonight for FHE, I invited my friend Trystan to join us via. The phone. Trys is in Rochester, MN, right now, and I wanted her to be a part of our family tonight as we sang "Families Can Be Together Forever" Then, my son-in-law Brian gave a beautiful lesson about adversity. This is what he read from the scriptures. 

"My daughter, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; and then if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends stand by thee, and they shall hail thee again with warm hearts and friendly hands." 

There was not a dry eye in our little family room tonight. We sang "I am a Child of God," had a closing prayer, and talked to Trys. She was so happy to be a part of our FHE tonight. She reminded me that I am blessed to have my family all so close to me and be able to share such good memories together.

Tonight, as I go to bed, I am exhausted from a long day; I have a migraine starting, and my legs, hips, and cramps are horrific, but still, I am at peace and grateful for my family and my friends who help to lighten my load on days when I need it, days like today. I love you all so much.

Vulnerability

 

TUESDAY, DECEMBER 28, 2010

Vulnerability

I had my appointment this morning with Dr. Paul Magtibay. I was nervous going into the Mayo this morning but not worried about seeing Dr. Paul Magtibay. I sat with Dr. Paul Magtibay and explained to him some of my fears. I told him that last week I prayed about him. That same night as I was researching him, I found a video that brought tears to my eyes. He was explaining to the people that, 1st and foremost, his family, wife, and children come first in his life, then his patients and practice are a close 2nd. I explained to him today how moved I was by those words he spoke; after hearing the sincerity in his voice, nothing else really mattered to me; I had my answer. I knew I could research and find out his credentials and even find out from other Doctors, including Dr. Peter Kreymerman, who had nothing but great things to say about Dr. Magtibay; what a great doctor he is. 

Still, it was more important for me to know what kind of man he was. As many know, Hysterectomy has not been a priority. Without explaining why, I will just say I have some personal fears, immobilizing fears that I have never explained to a doctor before but felt comfortable enough to talk to him today about it. He listened with intent and was very comforting and assuring.

We looked at my ultrasound results, and he said my ovaries look good and clear of masses or cancer for now. Then he explained that I had some options to find out more about the Uterine cancer, but even with trying out the other options, they would not be a solution. I asked him what his suggestion was, and he said he would advise a HYSTERECTOMY .... duh I knew that was coming. 

Please, if you are reading this, do not send me an email saying this will be the best thing I ever did. My fears about not having a hysterectomy have nothing to do with the actual surgery or recovery, it is very personal, and I choose to not blog or talk about it. I do not want to offend anyone, I just have some deep emotional fears and scars that have nothing to do with the ACTUAL Hysterectomy,  and when I receive those emails, it makes it worse for me; I sure love all of you for your prayers and concerns. Still, my situation is slightly different from the average woman getting a hysterectomy. I do look forward to not bleeding or having those horrible cramps. My surgery is on the schedule for next Friday. January 07; I will stay in the hospital and be down for a few weeks. My anxiety level for this particular surgery is extremely HIGH, so please tread softly with me; I need your prayers. 

After my appointment at Mayo, I met Haleigh for lunch; when I got up to refill my water cup, a woman sat next to the cups with her son. She said to him, "look at that lady's hair" I looked over to see that they were talking about me. The mother turned her head away when she knew I realized she was talking about me, then the son just laughed; the mother then made a comment as I walked back to my chair, "I seriously hope she did not do her hair like that purposely"  tears filled my eyes, it really hurt my feelings. I usually don't let those types of people in my life; it's easier to just walk away. But today, I feel a little vulnerable.